This year I am once again taking on a series of challenges to raise funds for charity, however this time it is more important to me as it is MUCH more personal.

Last October our beautiful and precious daughter Caitlin was diagnosed with a hideous, incurable neurological condition called Juvenile Batten Disease (CLN3).

https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Batten-Disease-Fact-Sheet

This is a degenerative disease that currently has no cure, or effective treatment, meaning we will be fortunate if Caitlin lives past the age of 20, she is currently 8 years old. Unfortunately, regardless of whatever age she lives to, our beautiful daughter will stop being "herself" much much sooner.

Whilst most parents will be planning for a future where they need to help their child with university fees, house deposits, driving licenses and wedding costs, we will be doing none of this for Caitlin. Instead, the devastating reality is we will be looking at covering the costs of specialist mobility equipment and a funeral.

Due to the degenerative nature of the disease, 'normal' life for Caitlin and our family will dramatically change on a regular basis.

Since the diagnosis, we have received incredible support from the Batten Disease Family Association, so I have taken it upon myself to try and raise as much money as possible for this small and under-funded, yet incredibly important, charity. I have set myself the task of completing the following endurance events throughout the year:

- Cambridge Half Marathon (6th March) ✅️

- Brighton Marathon (10th April) ✅️

- London/Essex 100 mile Cycle Ride (29th May)

- OSFC Kershaw Premier League 135mile Cycle Challenge (18th June)

- London Triathlon (7th August)

- Swim Serpentine 2mile open water swim (17th September)

- London Marathon (2nd October)

As a family we are currently trying to create as many memories as possible whilst we still can, before the dementia element of the condition fully takes hold, focusing on doing things Caitlin has insisted she would like to do in her lifetime. With this comes the additional challenge of having to fit my training (and the events themselves) around anything we do as a family.

With the dementia part of this illness, long term memory is the very last part to go, meaning memories now will be the ones that survive the longest.

Caitlin is a huge Harry Potter fan so we have already taken her Harry Potter studios which was a MASSIVE hit. She is also a huge thrill seeker, so a lot of her wishes revolve around theme parks. We have ticked off DisneyLand Paris, and are in the process of trying to plan DisneyWorld Florida. She has also insisted on meeting Daniel Radcliffe, Emma Watson, the Ninja Kidz, and seeing Katy Perry live in concert, things less easy to arrange!

Caitlin is already registered as legally blind due to this condition, something that causes her a lot of upset, even asking if the spell 'Occulus Repairo' from Harry Potter would work to fix her eyes! We are now noticing an increase behavioural issues caused by the early stages of dementia, whilst also playing a horribly anxious waiting game as to when the epileptic seizure portion of the condition will start.

Any donation you can make will honestly be greatly appreciated. 

Much love.